Educate Yourself
Facioscapulohumeral Muscular Dystrophy is highly variable, even among affected family members. Each person possesses a unique combination of genetic and environmental factors that influence his or her body and health in general and related to their FSHD.
To crack the code of FSHD, patients are essential. All the breakthroughs in FSHD have been made because patients and their family members got involved. We are hopeful that a treatment is within sight and your participation will move us closer to discovery.
There is great power in community. When we come together, each bringing our own unique strengths and skills, we inspire each other to go farther and reach higher than we can when we go it alone.
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us.
Your participation is vital to creating a world free of the suffering caused by Facioscapulohumeral Muscular Dystrophy (FSHD).
Education is our Best Weapon for Change
FSHD University is your center for advanced education about the art and science of living with FSH muscular dystrophy.
The inspiration for FSHD-U emerged from the success of Sequester Camp, the weekly program launched by the FSHD Society team when the Covid-19 pandemic forced widespread social distance. These activities are aimed at supporting the community in taking care of physical and mental health during this stressful time, while also feeding the collective hunger for more information and knowledge about research.
Latest Blog Posts
Help us grow our network
The future is in YOUR hands The FSHD community has an urgent challenge and a powerful opportunity to help support research studies and upcoming clinical trials. Currently, there are nearly a dozen very promising drug candidates. One is already being tested in patients. Others are in earlier stages. We are more hopeful than ever before…
Fulcrum’s interim findings from ReDUX4 trial are “encouraging”
This week, Fulcrum Therapeutics announced results from an interim analysis of data collected from its Phase 2 ReDUX4 trial, which is testing the effect of a drug called losmapimod in individuals with facioscapulohumeral muscular dystrophy (FSHD). The drug, which is…
Upcoming Events
Aug
20
Webinar on scapular stabilization surgery
Dr. Anthony Romeo NOTE CHANGE OF DATE. Join us for our webinar on scapular stabilization surgery at 1:00 pm ET | 12:00 pm CT | 11:00 am MT | 10:00 am PT. One of the classic symptoms of FSHD is "scapular winging." The muscles around the shoulder blade (scapula) weaken and allow the bone to...
Find out more »Sep
12
National Virtual Walk & Roll to Cure FSHD
The National Virtual Walk & Roll to Cure FSHD is the only national event focused solely on funding progress for FSHD. Led entirely by dedicated volunteers, supported by staff, these events take place all over the nation. Find your local Walk & Roll HERE! No local Chapter-Led Walk & Roll near you? Don't worry! You can still...
Find out more »Oct
15
Webinar – Accelerating Therapy Development: The Patient Community Role
This month's webinar presenter is Molly White, Vice President, Medical Communications & Advocacy at Dyne Therapeutics. Molly brings a unique perspective on the impact of the FSHD community's role in therapy development. She previously served as chief executive officer of Myotonic, an organization dedicated to advancing research and enhancing the quality of life of people...
Find out more »
The FSHD Society is a convener and collaborator to find solutions, but we can’t do it alone. We need you to join us. Your participation is vital to creating a world free of the suffering caused by FSH Muscular Dystrophy (FSHD).